Why disfigurement should be aspirational

By: Anne Soilleux

For this reason, people often tell me I am inspirational.  Now let me get this straight. I have lead a rather unremarkable life for anyone of my background and income group. I have not travelled the world (haven’t really wanted to), I have not scaled Everest (too lazy) and I have not found a cure for cancer.  I have mostly, got an education, gone to work and done pretty much the same as my peers.  But this is viewed as something extraordinary because I have a disfiguring disability. My only explanation for this is that other people must think that living with a visible difference is a truly terrifying experience. When you tell me I am inspirational, you are basically telling me you think my life must suck and that I am inspiring you not to feel sorry for yourself, because, hey, there’s someone worse off than you. And in doing so you immediately become part of the problem.

Knowing people don’t want to live your life makes it feel devalued and marginalised. It makes you feel as if you have nothing to offer, when you know absolutely that this is not the case.  I don’t want to be inspirational - I want to be aspirational. I want people to look at my life and not be afraid to live it. Because, after all, what is so truly terrible about looking different?

*** Can you relate to Anne's story? Do you think calling disfigurement "inspirational" is problematic? Comment below***

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